Oh this little lady. This last month has been a doozy. It has been a long one. And to be honest, this particular event was something I didn’t even want to think about. We were first approached about getting a G-tube for Lydia last spring. And I did NOT want it. I hated the idea of doing it to Lydia. I wanted to do everything I could to prevent it.
But I couldn’t. Lydia just wasn’t thriving. She wasn’t getting everything she needed. And it took me months to admit that. And it took me months to admit that it wasn’t my fault. I felt a lot of guilt. You should be able to FEED your child, right?! It is such a basic necessity and to not be able to fulfill that was really difficult for me to accept.
I know for many a G-tube is really not a big thing. But it was for me. A G-tube doesn’t have to be permanent, but I knew for Lydia, it most likely would be. The thought of having something permanently apart of her, it hurt my heart.
But here we are. After talking to several people in similar situations, every single person we talked to said that their only regret was not doing it sooner. And I began to accept. Even though it was so hard for me, I knew it was best for Lydia.
The days leading up to Lydia’s surgery were not great. Lydia was sleeping even worse than normal and we were both exhausted. The day before the surgery, the kiddos and I drove down to North Ogden to stay with Mark’s parents. Mark had to work and so he drove separately later that night. It was another rough night with little sleep. We left for Primary Children’s Hospital at 4:40 in the morning. Once we got there, Lydia had to get tested for COVID, RSV, and two different forms of the flu. We were directed to hang out in the car while we awaited her results.
Once Lydia was given the all clear, the three of us made out way into the hospital. Everything moved really fast after that. The surgery to get a G-tube is low risk. And we weren’t really worried about the surgery, but I was concerned about how Lydia would respond to the anesthesia. The two other times she has been put under {for her MRI and her ABR} didn’t go great. We shared some of our concerns with the anesthesiologist and felt like we were in good hands.
They put Lydia in a little wagon and we watched them wheel her away. I definitely have to say, I much preferred seeing her taken away in a wagon compared to a hospital bed! Mark and I were taken to the ICU waiting room to await the surgeon for an update.
The surgery went smoothly and Lydia had no bad reactions to the anesthesia. We were so grateful. Lydia took a long time to come out of the anesthesia though – this is normal for her. After we waited about an hour and a half after surgery they finally admitted Lydia into a room and allowed us to go to her. It was so good to see our sweet girl. It was nice to just let her rest and not be rushed at all.
The rest of the day was pretty relaxed. But as the day turned into evening, Lydia started to really struggle. She was very fussy and it was hard. The nurses seemed frustrated and kept asking us if it was pain. We don’t know. This is, again, so hard about not being able to communicate. Kiddos with Rett Syndrome are known to have a high pain tolerance, and I believe Lydia does. And something just made me feel like it wasn’t pain related. I think she was just exhausted.
Sleeping arrangements in the hospital are less than ideal, and instead of Mark and I trying to get REAL cozy on the couch, he went back to North Ogden while I stayed the night with Lydia. And thus began an extremely long night.
Luckily, we had the nicest night nurse. I am so grateful for her. She really tried to help and I appreciated what she did. Unfortunately, it just worked out with Lydia’s medications and the changing of her feeding schedule and checking her vitals, that we had people coming into the room every hour throughout the night. Lydia doesn’t go to sleep well in the best of circumstances and so this was pretty brutal. And since Lydia was having a difficult time, the nurse decided to scale back Lydia’s feedings. It felt like the night that would never end. By the time morning came and Mark came back, we were two exhausted little ladies.
Things the next day did not go as planned. We had a new nurse this day and she was also really helpful and kind. We were starting to get a little desperate with Lydia though and she suggested that we take Lydie on a walk. This was the best idea. Our nurse found a wagon and we hit the hallways.
Lydia immediately calmed down. It was the best thing for her. I did have a moment though, while we were walking the halls on the main floor. I remember the first time Lydia and I had an appointment at Primarys. We passed a little girl who was probably eight or nine being pushed in a wheelchair, trailed behind with a mom and a nurse with her IVS. I remember tears coming to my eyes then. My heart hurt for that little one and her mom and I was scared that one day that would be us. And as Mark pushed Lydia in her wagon while I trailed behind with her IV and feeding bag, we passed a mom with her child and she looked at me I am sure the same way I looked at that mom almost a year ago, and I remembered.
When we got back to the room, the nurse decided to take out Lydia’s IV. She became a new girl. Lydia seemed to be doing better. But since they had backed off of Lydia’s feedings in the night, our “goal schedule” was set back. Shortly after we got back to our room, our nurse told us we were being moved rooms and nurses. We were so disappointed to lose our nurse.
But we moved to our new room and then Mark and I had to leave to go to our feeding class. This was a mandatory class given by the wound team in the hospital to teach us how to care for Lydia’s tube and any possible infections that may occur.
When we got back, Lydia was calm. We were told that we could leave at 12. We were so excited! But 12 rolled around and they said we needed to stay longer. The rest of the afternoon was pretty frustrating. Our nurse was absent and honestly, we kind of felt like she was dodging us. They kept telling us times that we would be discharged and then those times would pass and no one would come and even tell us why. We asked if we could take Lydia on another walk – she was really unhappy – and we tried to come up with different ways to escape the hospital! Kidding, but also kind of true!
Once we came back and again, had no guidance I came looking for our nurse. We were told we were going to have another new nurse (WHAT?!). We had no idea what was going on and why we were being bounced around. And at this point, we were getting worried about what to do. When we were told about the surgery they said we would be discharged first thing in the morning and we didn’t have arrangements made to stay another night. Mark had to work the next day and I hadn’t packed extra stuff for the other kiddos.
I finally went looking for our nurse and asked if she could tell me what the plan was because we needed to make arrangements. Oh goodness it was frustrating. Finally, at five o’clock we were discharged!
It ended up being a blessing that Mark and I had to drive separately. Lydia and I headed straight home while Mark went up to North Ogden to get the other kiddos. The drive home was not without tears – from both Lydia and I. We had to stop several times so that I could soothe Lydia and my heart just hurt. It hurt that we had to do this and it hurt that so much of our life feels so incredibly hard right now. I hated putting Lydie through all of this and then have to drive home several hours. I have been a lot more positive about that aspect of our life recently, but this caught me up again.
<Just so you know, I am doing much better now. This is not a cry for help! I am sure a big part of it was just plain exhaustion, but it felt really hard for those couple hours.>
Lydia and I got home around nine. She was so tired and I was really nervous to have to do everything on my own. Luckily, our sweet girl was so patient with me as I fumbled with my manual and tried to figure things out (I was surprised at how little they let Mark and I do in the hospital). But we DID IT!
By the time I got her asleep and changed into my pajamas, Mark and the other kiddos were getting home around 10:30.
Mark had to work the next several days and it was definitely a time of learning for me. But I have been surprised how quickly things have come together. I feel so much more comfortable with everything, and other than feeling like a cleaning maniac about her wound site, things are going really well (seriously, the leakage gets me!). She has even gained a whole POUND in a week! She is the highest weight she has ever been and I hope she will have the energy to do what she needs.
I am so grateful for this little girl. Her spirit is strong. She has taken everything so well since we have been home – we decided hospital life is most definitely not for us – and I love seeing our girl happy.
